Kiara Trussell thought her dreams of being a cheerleader would never happen. This is partly because Friedreich’s ataxia has made her wheelchair bound. Friedreich’s ataxia is a progressive neurological condition.…
Tamara is a wife, mother of two, personal trainer, yoga instructor, nutrition coach, and a blogger. Furthermore, she shares her story about having Guillain–Barré Syndrome. When Tamara received her Guillain–Barré Syndrome…
Twenty-three teenagers living with rare diseases worked the runway at a recent fashion show in Texas. Sixteen-year-old Maggie, living with Von Willebrand disease, was one of the models for the…
Storytelling holds immense power and, thus, is one of the best ways to raise awareness of rare diseases. Hanna Smith has a career as a journalist. Over the years, she has interviewed people…
Think back: Remember those halcyon days of 2014 when we spent the summer dumping buckets of ice water over our heads and challenging our friends to do it or pay…
The word “marathon” has become so ubiquitous that it is almost cliché. When people hear the word, they think of their favorite reality TV show played for 12 consecutive hours…
Eryn Gaffney, now 20, was diagnosed with Tourette syndrome at the age of nine. Tourette syndrome occurs as a result of the basal ganglia misfiring. This is the part of…
High school senior, Mary Lacy Lusk has ankylosing spondylitis (AS). For those who might not know, ankylosing spondylitis is a rare autoimmune disorder that is similar to rheumatoid arthritis. Mary states…
Whenever I couldn’t perform to the best of my ability or follow through with a project, I would typically come down very hard on myself. One thing I am trying…
There is no way to prepare yourself to hear that your child has an incurable rare disease. After the initial shock of learning that their child will most likely die…
Bethany Barber is a Virginia native living with sickle cell anemia who has dreams of making it big as a model. She goes on daily castings, as modeling is her main…
About four years ago, Sagar Baheti found out he had an eye condition called Stargardt disease. Initially, he was not alarmed by the small symptoms that indicated Stargardt. He did…
Two years ago, Lucas wouldn't go anywhere near water. Last month, he tackled a swimming challenge, and he did so in support of a cause that's close to home. Lucas…
Just a few days after her wedding, when most people are on their honeymoon, Morgan Alamo was told that she may have cancer. Who would have thought that the wedding…
Who doesn’t like a good comeback story? Especially when it's about POTS? There are far, far, far too many challenges in life that can make a person come undone. From…
"I have chronic Lyme Disease and it's chronic because it took so long to get it treated." William and Mary student Alexis Plofchan is the subject of a seven-minute documentary directed by…
A quick search of the Internet will tell you that fatigue is a common symptom of almost every disease, disorder, and syndrome. There are other symptoms that tend to be…
Juvenile idiopathic arthritis (JIA) is the most common form of arthritis in children. It occurs when the body's autoimmune system attacks healthy tissue and causes inflammation of the joints. What triggers…
One teenager with Hunter syndrome doesn't let anything hold him back. This doesn't go unnoticed. Hunter syndrome is a rare inherited disorder which prevents production of a key enzyme that…
Christmas 2016 seems like a lifetime ago. In fact, I can't figure out if my hair grows twice as fast as it used to, or if time is passing at…
Duchenne muscular dystrophy is a very serious and fatal disease that slowly destroys every muscle in the body. This rare disease affects one out of every 3,500 people and mostly…
12-year-old Jack Bolton has had spinal muscular atrophy (SMA) since he was born. He is confined to his wheelchair because of SMA, which causes his muscles to weaken as he…
Everyone has a story. Every person has something that they can share. Reading about another person’s story can help you and your family cope with Hunter syndrome. Also, learning about…
Andrew Graham was diagnosed in 2009 with a rare autoimmune condition called ankylosing spondylitis, or AS. This disorder primarily affects the bones in his back and causes his vertebrae to, over…
So there’s this Greek guy who happens to be suffering with frequent bouts of pain and fatigue as a result of living with sickle cell anemia (SCA). And when he…
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